New member questions

[Suwharris@aol.com]

Hello all, So glad to find this group and hoping for some advice. I was diagnosed w/MC three months ago, and recently finished two months on Budesonide. Since diagnosis, I started waking up from deep sleep every 2-3 hours with intense heat in my tummy, usually having to get up to pee. This has never been an issue before. Does anyone know if this is caused by the Budesonide or just a symptom of MC that I’ll have to live with? Also, after finishing the Budesonide, the cramps came back. My doc prescribed Hyoscyamine for cramps; has anyone taken this and did it help? Another concern: I’ve gotten mixed directions as far as taking the Covid vax since MC seems to act like an autoimmune disease; what’s your recommendation? And last, doc has given little advice on diet except go lactose-free. I’d appreciate any suggestions that’s worked for you. Thank you so much much for your help!
Susan Harris

[tex]

Hello Susan,

Welcome to the board. I've never taken budesonide,so I can't speak from experience, but as far as I'm aware, that's not an issue commonly associated with the use of budesonide. I can tell you from experience, though, that active MC can cause the same symptoms as interstitial systitis, which for me caused the problem of bladder pain and frequent, urgent urination. This symptom is somewhat common among MC patients, but it's undocumented in the medical literature. The symptom will slowly fade away after you control the intestinal inflammation, and your digestive system begins to heal.

As is always the case for medical treatments involving drugs, medical treatments for MC only provide temporary relief. They treat the symptoms, not the cause of the symptoms According to published medical research, 85 % of MC patients suffer a relapse of symptoms after discontinuing a budesonide treatment. MC symptoms are caused by immune system reactions to antibodies caused by certain foods in our diet. In other words, the inflammation in our intestines is regenerated with each meal. Therefore, if you wish to control your MC symptoms for the long-term, you'll have to do like the rest of us, and make some drastic changes in your diet. For guidelines on how to go about this, please refer to the instructions offered in the topic posted at the following link:

Suggested Eating Plan - Stage ONE

I've never taken hyoscyamine, but according to member posts here, it helps control cramps for most people. Again though, it only treats the symptoms, not the cause of the symptoms. The proper diet changes will resolve the cramps permanently.

Based on the best medical information available, our risks of an adverse reaction to a vaccine is no different from anyone in the general population. But if you catch COVID-19, you will almost surely suffer a full relapse of MC symptoms, because the intestines are loaded with receptors to which the virus attaches. Personally, I'll get the vaccination as soon as I can get an appointment scheduled.

Regarding the lactose-free diet that your doctor recommended: lactose is only the tip of the iceberg. The casein in all dairy products, the gluten in wheat, rye, and barley, products containing soy, eggs, and for some of us, other foods, are a much bigger problem than lactose. We're not all sensitive to all of those foods, but most of us are. And we're all sensitive to gluten. The bottom line is, "We're all different, but every one of our food sensitivities must be removed from our diet before we can reach a stable state of remission".

There are thousands of posts about real-life experiences of MC patients on this site. Reading some of them can be very educational. For treatment success stories, read some of the posts at the link below:

Member Success Stories

I hope this helps. Again, welcome aboard, and please feel free to ask anything.

Tex

[Suwharris@aol.com]

Tex, thank you so much for the helpful info!! Most importantly, taking your time to respond. I’m so grateful,
Susan Harris